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A-Swiss

I'm A Noob, But This Ticks Me Off!

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Ok, I may be the only one that feels this way, but here goes:

I was recently diagnosed (2 weeks ago), so this is ALL new to me. I went out to try to repress my urge to say "F this, I am eating what I want" and buy the stuff I need to eat. Upon finding a local store that has a whole section on gluten free items; I come to find that "gluten free" somehow also means "this is where we just lump all the health food together". If I have to walk around and read EVERY label to see if it is gluten free - how is it any different than just having it in the general store? Nothing is more depressing than seeing something that looks good and reading that the only reason it is there is because it is organic. Though I understand that you should eat 100% healthy, I could care less if a Chick Fil A sandwich is made of old shoes if I could eat it. I guess my gripe is that it is hard enough trying to fit in without having the added pressure of even being filtered in what is supposed to be a specific section. Does anyone else find this when they go shopping!?

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Hi A-Swiss,

Welcome to the site! The best part of your life is likely just beginning. I can identify with the suffering you've probably gone through getting to this point. I'm here to let you know that everything will get better, now that you are diagnosed. Do you know all the foods you are intolerant of? Yes, I can identify with the frustration you feel when you go shopping--but please believe that it will get better. Your mind will become clearer, your moods will become more even, your cheerfulness and joy will return, and you will live again. How do I know this you ask. I've had symptoms since the age of 8 and am now 63. I believe that we are called to be pioneers in learning about this disease. Our bodies are wonderful to help us know what we can tolerate. I learned on my own that all grains, all milk and dairy, egg whites and yeast were the main culprits, then after learning five years ago that I had Celiac, I narrowed that down and eliminated casein, whey, etc. etc. Reading labels takes time, but soon you will have a long list of foods and restaurants that you know you can live with and trust. It feels really great now to know that I can handle this challenge with dignity and grace, and that I can choose to take the high road and see the positive things life has to offer, if only I will choose that route. I am happy that now doctors are beginning to realize that Celiac is common, and that they can have a hand in making our lives better. Feel free to email me at welda@att.net anytime and I will tell you how I always take food with me when going out, and always make sure that I have plenty of my allowed foods at home. We can do this! Welda

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Shopping is definitely VERY hard at times. I've only been at this for about 5 months so I understand. If you visit a Whole Foods that makes life a lot easier because they have about a half an isle of gluten free things (i know thats not even a lot haha) but it definitely helps not getting your hopes up about thinking something is gluten free when it's not. I also have found a few local health food stores that have a lot of foods, and the staff is very knowledgeable in helping find things you like. Usually they're really small so you get personal attention.

Another great option is ordering online. gluten free.com or glutenfreemall.com and this site have tons of options. I get my cereals, bagels, snacks, and other hard to find items on there. Let me know if you want some recommendations because I've aquired a few over the months!

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Hey A-Swiss

Believe me - being gluten-free isn't as depressing as it sounds.

First of all, you'll feel sooo much better.

secondly, you'll just have to learn to ask people about food and read lots of labels. Do some research, and it'll pay off for you, I can guarantee it. Yeah, it may sound like a bit of a pain, but it'll become second nature to you and you'll find out how much stuff is out there that you can actually eat. When I first found out that I had to go gluten-free, the thing I hated most was not being able to have take-out. But MacDonalds has some nice gluten-free cakes and the meat patties are also gluten-free, so (if ur not too sensitive of course) you can just eat the meat or ask for a burger without the bun - sounds a little desperate I know, but at least you can still have something unhealthy! ;)

shopping is a bit of a pain at first, but having been gluten-free for 9 months now, I remember what I can and can't eat and ingredients with gluten will be known to you. There are so many gluten-free products available now and many 'normal' foods are ok to eat. Living gluten-free isn't about missing out on what u enjoy - it's just about substitution. (and a bit of research :) )

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Well this is perfectly normal.

First off I am the first to admit what I miss is the convenience!

However given time you will really stop missing specific foods so much.

In the same way you find you just miss out aisles at the supermarket ... but the mixed in situation is a pain!

Imagine you don't like seafood.... you just miss that section without thinking... often its convenient they are grouped together, it gives a whole section you can miss...

The gluten thing is like this... sometimes you have time and look for new things but often you just have a mental or even physical list of what you can have...

with some time and practice it really becomes less arduous and just normal.

I often compare it to the first time I had a driving lesson in a stick shift car.

After 5 mins your thinking WTF... how can I balance this clutch with the gas and look in the mirror and do the signals all at the same time....

After you have driven a stick shift for some time you don't even think about these things its automatic.

Being gluten free is pretty like this... it seems overwhelming... it seems next to impossible and not worth it but it just gets easier and easier until its second nature.

You can take an east route and say hey I'll learn to drive in a auto... but frankly... after a couple of lessons the difference is neither here nor there except if you learn in a stick shift you can always hire/buy either...

Getting to know the products takes a bit of time and seems overwhelming at first but stick at it and you soon start to feel like its easy. The same for learning to cook your own gluten-free stuff... I find it easier to cook my own than find something safe...

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But MacDonalds has some nice gluten-free cakes and the meat patties are also gluten-free, so (if ur not too sensitive of course) you can just eat the meat or ask for a burger without the bun - sounds a little desperate I know, but at least you can still have something unhealthy! ;)

Sorry to be such a bummer but McDonalds is not as safe as you might think. I am wondering what gluten free 'cakes' you are finding there. Even the FF are risky, I wouldn't advise anyone of us to eat there.

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I've come to dislike grocery shopping. Not that I don't have the sections I can go to down-pat, it's just so stressful to me. The worst part is going through the cash, and no matter how many times I ask them, write notes to the manager, etc., to keep the conveyor belts clean, they always have something white/powdery and suspect on them. So, I have to go through the spiel again, "could you clean off the belt, please, I have 'wheat allergies'". I don't bother telling them I have celiac because it's way too complex. Meanwhile, shoppers behind me can get huffy because I'm holding them up. The clerks are always fine about it, though - they just need to be constantly reminded. I'm amazed I can see them standing there w/no customers; so why don't they clean the belt off if they have nothing to do?

I also find I feel resentful, at times, when I look in other people's carts, and by the contents, they obviously don't have any problems. I hate to say that. I never felt that way until I become intolerant to many foods besides gluten. I'm not tempted to eat foods containing gluten, though, so I've always been lucky that way. I just wish I was able to eat the gluten-free substitutes that I didn't have a problem with before.

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Sorry to be such a bummer but McDonalds is not as safe as you might think. I am wondering what gluten free 'cakes' you are finding there. Even the FF are risky, I wouldn't advise anyone of us to eat there.

I agree!! McDonalds is not gluten-free friendly. The only thing I trust there is the eggs and sausage patties that come with the Big Breakfast. And since Im egg intolerant (thanks to celiac) that leaves only the sausage. Dont know a about you, but I would rather stop at a gas station and get some Doritos, and a Hershy bar, than go to McHeartattack and ask for the Big Breakfast, minus the egg, hashbrowns and biscuit.

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:lol::lol: Did you do that on purpose??? :lol:

hehe .... nope but thanks ...

I agree!! McDonalds is not gluten-free friendly.

That is really the reality....

I would rather stop at a gas station and get some Doritos, and a Hershy bar, than go to McHeartattack and ask for the Big Breakfast, minus the egg, hashbrowns and biscuit.
See I wouldn't even trust the sausage because of cross contamination.... like you I'd rather improvise safe stuff from a gas station or convenience store.

The bummer is (pun slightly intended) ... whenever I'm pushed to convenience food is absolutely the wrong time to get hit by a bout of 'D' ...

Its never pleasant but stuck on a plane, train or in the car brings a whole new meaning to 'roadside stops'.

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My Chil fil a manager said they can do any of the meats gluten-free just ask. They cook it on a seperate grill and do not put the coating on it. It tasted very good. I just tried a bite because that week I was supposed to be off salt. Also the fries are in a dedicated fryer and he said gluten-free. He even explained to the employees about cleaning the grill first. You may want to check it out more.

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So-- I'm new to this too and right now, while reading your posts, you all seem way too okay with this.

I'm not a little angry, I'm so ridiculously angry that when my stomach growls I start to cry because I know I'll have to go into the kitchen and find SOMETHING that I can actually eat.

I went without gluten for 5 days, felt a ton better-yes, but it's still not at a point it's worth it to me. I learned how to function being sick every time I ate, and now this doctor comes along and tells me that it doesn't matter if I can cope with it-- that it can actually do much worse things!?!

So to spite the doctor I had a piece of cake. Cake is one of the few things I truly LOVE. And I thought f* this I'm eating it.

And I was pretty okay for a little bit. (I have a stomach condition as well that prevents my body from pushing food through to my intestines--apparently my duodenum has given up at life.) So, I go out to eat that night, maybe 4-5 hours later and have a lovely gluten free meal. And then I get sick. But this was about 5 times worse than I was used to. So, now, I wonder if I hadn't gone gluten free at all would it have been as bad?

Then, I decide to muster my courage and actually go grocery shopping- I didn't even bother with my regular grocery store, as I didn't want to weep through the aisle seeing all the stuff I would normally buy. I went to Trader Joe's. I was actually a little excited about some of the stuff they had that was gluten free. Until I went home and tried it. Mainly bread, crackers, and the like are what I miss. I can't stand knowing I won't be able to eat my mother's chicken and dumplings again. So I'm trying to find replacements for stuff like that and I can't find anything. It all tastes absolutely terrible.

I've already learned to cope with my milk, tea, and apple allergies. I thought milk was a omnipresent thing... but to have to avoid it and glutens? I hate my life.

I really really don't understand how you all live with this everyday. I'm not strong enough for it.

Ranting helped some. I'm not trying to bring anyone down, but how do you do this?!?! I mean, really, HOW!?

Renee

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I've already learned to cope with my milk, tea, and apple allergies. I thought milk was a omnipresent thing... but to have to avoid it and glutens? I hate my life.

I really really don't understand how you all live with this everyday. I'm not strong enough for it.

Ranting helped some. I'm not trying to bring anyone down, but how do you do this?!?! I mean, really, HOW!?

1) Forget the substitutes for now. They will not fill that "memory" spot. They will run up your grocery bill too.

2) Go simple. I try to follow this formula (give or take) for a meal...meat, carb, green veggie, colored veggie (and/or fruit).

That could be roast, potatoes, brussel sprouts and carrots

or it could be

Baked chicken, rice, green beans, mixed fruit

just sub in the stuff you like

Sometimes I pick the meat and assign the kids to go to the pantry/fridge to pick out the others.

We have even tried meats I have never cooked before. I am 40+ and had never cooked a pork chop.

3) add sub slowly. When you get the simple routine going then start adding subs slowly. IMO there is less frustration that way. Don't call them by their old name either. I don't use the term mac & cheese for our sub. That brings back the old memory. Call it something new like "creamy pasta" or whatever you want.

On my meal formula I will have a simple meat, carb, green veggie but with the fruit I may try a peach cobbler from a recipe I found here in the recipe section. That way if it is a flop my WHOLE meal isn't ruined, I'm not hungry and grumpy and can deal with it better.

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Renee, it gets better. It truly does. You're trying to get used to a big life change and that's painful, being angry and sad and in denial are all part of adjusting to that change.

I eat gluten, milk, egg, legumes and nightshades - free. What I did at one point was to say, ok let's see what I CAN eat - and then I figured out how to make meals out of those foods that I can have.

Why was I so motivated to stick with it? My most annoying symptom if I eat gluten is a terrible depression which takes all the fun out of my life. No gluten food would taste wonderful enough to be worth that to me.

The easiest gluten & milk free foods are fresh foods like fresh fruit, vegetables, meat and fish. You can do a lot of tasty things just simply stir frying different veggies and meats. That'll give you one or two safe meals a day (cook enough to have the leftovers for lunch for example).

As to cake - gluten free flours are actually excellent for making light fluffy cakes with, because they're lighter than gluteny flour.

Bread isn't going to be the same ever again...that's why I preferred to start with rice cakes, at least rice cakes are just what I expect them to be if you see what I mean. :) Most gluten free breads taste better if you either warm them in the microwave or toast them. (Remember though you need a separate toaster to avoid cross contamination). A lot of people find they like home baked bread better. Plus after a while you start to forget what gluten bread tasted like and you don't miss it so much.

Maybe give yourself a short term goal, say a month or so. Promise yourself that whatever you do, you're not going to have gluten in that time. If it means initially putting up with a boring diet, well it's just for a month.

That'll give you time to find out more options of foods, and really get over the cravings (you'll keep craving gluten if you don't give yourself a good period of time 100% gluten free). In the end of that month you might already have found new favorites.

Also, during the first month, you are allowed to rant and rave here every day if you need to. :) We'll understand.

How about that?

Pauliina

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Im with Mom23 now. I eat simply and after you get used to it, you actually hate the processed stuff. Your tastes change to eat more natural foods. They really taste good if you give them a chance. Once your brain detoxes from all of the artificial taste stimulants like MSG, Natural Flavor, Artificial Flavor, etc. you will find you enjoy whole simple foods.

I went through extreme anger many times. I have studied food for over 12 years trying to find answers to my neurological disease. I earned a PHd in Nutrition from Clayton College in the process, but still at times have sobbed openly and screamed to the heavens and unfortunately my poor DH "What can I eat?". I mean crying and screaming at the top of my lungs in the kitchen pounding the pantry. It aint pretty. But after cutting various things out over the last 12 years, I am an old pro.

So cutting gluten out a little over a month ago wasnt that big of a deal. A few days of tantrums and now I am on a new and improved eating routine. I know my body is healing because I have seen some improvements. With neuro symptoms it can take time. In some cases over a year. So it would do me absolutely no good to stay angry. I need to stay positive so my body can heal completely. And I know it can!

I am Gluten Free, Dairy Free, Soy Free, Corn Free, Night Shade Free. I challenge any of you to find "man-made" products without at least one of those. I just dont eat processed foods anymore. Even if I could find them, they would likely a. be expensive b. taste nasty.

So what do I eat?

Lots of Veggies (cooked and raw). I make delicious homemade dressings, pesto, sauces. I invested in a Vita-Mix blender 12 years ago. WELL WORTH IT! I eat yummy fruits. Sometimes make a baked dessert with them using gluten-free flours and or nuts. Nuts!! I love em. And you can find delicious granola's that dont have any of those I omit in them by Lydia's (google them). They are ubber yummy. I eat any meats I want (grilled, sauted, baked seasoned however I like within my allowed foods). Eggs are good with me. Rice, Quinoa, Buchwheat. You can make some delicous pilafs with them. I enjoy cooking so much now. Ive bought books and find free recipes online and am constantly experimenting.

It really is ALL about ATTITUDE. If you can find a way to be positive, the lights will come on and you will not only heal your body and feel better physically, but you will also feel awesome mentally!

Shay

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I really really don't understand how you all live with this everyday. I'm not strong enough for it.

Ranting helped some. I'm not trying to bring anyone down, but how do you do this?!?! I mean, really, HOW!?

Renee

Renee, It will get better, promise. I learned to live with this because I would be dead now if I hadn't. I am one of the 'lucky' ones who don't show up on blood work so it took me a very long time to get diagnosed. The symptoms you have will get worse, and they can impact any body system, the brain, the joints, gallbladder, stomach, skin, kidneys, heart literally anywhere your blood goes your body can suffer. Chances are your duodonal problem will also resolve along with the gastroparesis that you are describing will resolve on the diet. It can be hard to see how much gluten impacts until the antibodies have left your system and it is running on normal again.

There are a lot of foods you can eat, those are the ones you need to concentrate on. It helps to shop the outside aisles of the store, eat fresh whole unprocessed food. There is a whole world of tastes out there and much of it is gluten free. When I was first diagnosed I didn't know how I would ever find the energy to actually cook everything we ate. It wasn't long before I realized that putting a chicken breast and potato in the oven actually gave me more time not less. I could throw it in and forget it till done and go read the paper or do something with the kids.

There is a greiving process and a withdrawl aspect to gluten, remember it is a neurotoxin, both will pass. You are not alone in your anger, we all have been there. Hang in there and vent as much as you need to, we do understand.

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Basically, you have to decide whether THE FOOD YOU EAT has enough control over you to compromise YOUR HEALTH. What you're telling us is that your tongue has so much control over the rest of you that you will gladly continue damaging yourself to the point where your duodenum will no longer push food through. Eventually, you're going to have to decide whether or not FOOD is important enough to be sick for.

When I learned I had Celiac, I ate rice pasta with meat sauce for two meals a day for three months straight. I had eggs for the other meal that whole time. Yeah, to some people, that sounds like a death sentence. For me, NOTHING is worth going back to how sick I was. Not a job, not my family, not my house, not my car. I would rather be HOMELESS than be how sick I was, because I was DYING and none of the other things really matter if you're dead, do they? How can food be more important than all those things?

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It is frustrating to be gluten-free at times

it is tough to be gluten-free at times

for me, I feel so much better (physically and mentally) when gluten-free that it makes up for the tough parts

yes, as ravenwoodglass said, vent here daily if it helps!!

I agree with Mom23boys, a simple, from-scratch diet is the easiest (mentally, time-wise and $) way to go, at least at first.

once you get past the first few shopping trips, it *does* get easier - you know about "safe" products, you develop some dishes that you like and are "safe", you merely have to skim the ingredient lists of anything that has ingredients even if you've bought it before...but it's a skim, not a "now I must read the list of ingredients on everything in aisle 5" ;)

Believe me, most of us have been there and it was a slog but it will get better.

Do be aware that you may go into some gluten withdrawal (physical and/or mental), and you may have other food sensitivities that pop up once your body adjusts to no gluten (many of us have/had issues with dairy - I avoided for about a month after reacting while going gluten-free, then when I re-tested it I was okay).

You may go through a phase where you think you're sensitive to everything (I did...I think it was just how de-toxing felt for me - but even then it wasn't nearly as bad as how I felt when eating gluten).

But, hopefully, you will feel much better soon and that will boost your mood & your motivation!

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Im with Mom23 now. I eat simply and after you get used to it, you actually hate the processed stuff. Your tastes change to eat more natural foods. They really taste good if you give them a chance. Once your brain detoxes from all of the artificial taste stimulants like MSG, Natural Flavor, Artificial Flavor, etc. you will find you enjoy whole simple foods.

......

It really is ALL about ATTITUDE. If you can find a way to be positive, the lights will come on and you will not only heal your body and feel better physically, but you will also feel awesome mentally!

Shay

This is really true.... we learn to like certain foods and dislike others. Some people will never like cilantro or quinoa sure, but everyone can teach their body not to react by cravings for junk food. Junk food is a drug.. no different to tobacco in many way's yet millions of people who thought they could NEVER EVER quit smoking do so every year! Like quiting smoking.. it starts off seemingly impossible, the hardest pat comes first and the body slowly detoxes ..

This process can take some time BUT each day you get further is one less day you have to repeat... slip and you almost start at the beginning...

After you have quit smoking and got rid of the toxins a cigarette tastes like .... well putting something distinctly disgusting in your mouth ... the same gos for the artificial flavor enhancers etc.

Gluten itself is an exorphin, that is it attaches to the bodies endorphin receptors like opiates. However unlike opiates it doesn't fit very well and damages them. This can lead to the body temporarily loosing its ability to self regulate mood. Morphine deriviatives cause withdrawal because the body has become accustomed to having the endorphin receptors filled artificially and hence withdraws its own production (OK this is vastly simplified) whereas gluten is different, it damages them but the body still produces it, it just binds less effectively.

Withdrawal from gluten can be unpleasant.. but not as unpleasant as opiate withdrawal. The trick though is to take every day at a time and count every day as one day closer.

Everyone is promising you it gets easier and it DOES..... but you need to take those steps yourself and achieve them yourself. This doesn't mean everyone here is not there for you but only you can make the first step and then the second...

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Hi Renee and any one else being forced into the gluten-free (Gluten Free) life. I understand how hard this can be, I made the switch about 3 years ago. My wife figured out I had Celiac after talking to a girl in one of her classes who had it. She put me on the diet because I was in terrible pain every time I ate and hungry all the time. Turns out my good healthy diet was killing me.

Well my wife took this very hard and was depressed for about 4 months. She is not a celiac, but she did all of our baking, even making bread for us so we did not have to have store bought junk. Funny, she used to add extra Gluten to the whole wheat to make it lighter. LOL

We had to learn to cook all over again. This was a big deal to us as we both love to cook and entertain. My wife thought this was lost to us forever. We would never be able to eat out or go to other peoples' houses for a meal. Thankfully this is not the case.

We did have to learn to cook all over again. To me this was fun and exciting but my wife could not make most of the German desserts she grew up with and thought she lost part of her culture. We now can throw together a meal in no time, make great desserts and she learned to bake gluten-free bread and convert her box of tort and other desserts to Gluten free. I am feeling great. No chest pain, no stomach pain and the unending hunger has ended. My body is healing. My friend just asked me to bake him the same cake I made for my wife's birthday. It was so good no one believed it was gluten-free. Also that way he knows I can have a piece when we come over to celebrate. He said it was the best chocolate cake he has ever had. (Thank you Betty Haggman)

there is a very good book out there called "The gluten-free bible". That would be a big help to anyone new to the gluten-free lifestyle. The author has a part about culture shock. she explains that you do feel like you left your home and are thrown into a new culture. Foods are different here, you have to watch everything you put into your mouth. You have to get used to new customs because you have to ask about everything you eat. You have to get used to new shopping habits. Having lived overseas in a foreign culture, yes, going gluten-free is a totally different culture than the typical American diet. Fortunately you can decide that since you are going to have to make a huge life change anyway why not start to eat healthy foods or you can find enough junk food if you look hard enough.

Sorry this is so long but changing your eating habits is for life, and hopefully that will be long too.

Todd

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Upon finding a local store that has a whole section on gluten free items; I come to find that "gluten free" somehow also means "this is where we just lump all the health food together".

My local grocery store does the EXACT thing! It used to drive me mad. I'd spend hours reading labels on everything. Now...I just buy whole fresh food that I cook/prepare myself. I figured these "convenience foods" were not so convenient if I had to spend my whole Sunday afternoon reading labels. If I really want something out of the ordinary or pre-made, I'll shop online.

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This is undoubtedly one of the trickiest things. First of all, once you've gone through the process of learning what you can and can't have AND THEN learning how to navigate the grocery store, everything can change. Going on vacation, going to a new store, having the store rearrange their layout -- anything can cause problems again!

In my experience, the best stores are getting good at providing info signs and signals. For example, Wegman's (mostly in PA) codes every store brand product that they stock with little circle codes on the front of the box. They include gluten-free, vegetarian, dairy-free, contains nuts, etc... I wish EVERY store did that.

[Disclaimer: some of this is explored in the upcoming issue of EasyEats. I've been impressed with several stores (like Wegman's) from this research, so I may be biased. Sign up and get the full grocery store article at www.glutenfreemag.com]

- Joel

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Hey everyone-

Thank you so much for all the advice and support.

I'm still gluten free, haven't succumbed to the craving for cake yet. Go me.

I took your advice and stopped looking at anything that is not whole within itself. I'm going to give myself time before I try to replace anything that I actually know because I need to let the memory fade.

I haven't made it back to the grocery store yet, but I plan on braving it again this weekend...this is a life change and I have to figure it out whether I like it or not!

My attitude goes from okay to VERY not okay at times, but I think I'm going through the grieving process when it comes to wheat. That sounds ridiculous, but so far I've gone through shock, denial and anger...I look forward to bargaining and eventually acceptance:)

I had another question though-- I find that even though I'm on this diet I'm gaining weight. As in I've gained about 6pds over the past two weeks. I've lost about 45 pds over the past two years due to very hard work, exercise, and calorie counting because I have hashimoto's thyroiditis which makes it really difficult to lose weight no matter how sick you are.

So I'm eating maybe 12-1500 calories a day (mostly fruits, meats, fish, and veggies) still exercising and gaining weight which makes absolutely no sense. I thought I'd see if anyone else had had this problem when going gluten free or if it's just a thyroid thing and I need to get my levels checked...

Again, thank you for all the advice. It's very nice to be able to read your replies and know I'm not alone in this.

Renee

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Renee,

You should have your thyroid monitored closely for awhile because the way you absorb your medication can change on the diet. Usually for the better. And some can reduce their meds. A few can quit taking them over time as their body heals.

You could gain weight because your body is finally absorbing nutrients (vitamins and minerals) but also FAT. I know you dont want to gain weight, but if it were me, I would allow for some (maybe 10 pounds) so your body can get what it needs. And then reassess where you are.

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Renee,

You should have your thyroid monitored closely for awhile because the way you absorb your medication can change on the diet. Usually for the better. And some can reduce their meds. A few can quit taking them over time as their body heals.

You could gain weight because your body is finally absorbing nutrients (vitamins and minerals) but also FAT. I know you dont want to gain weight, but if it were me, I would allow for some (maybe 10 pounds) so your body can get what it needs. And then reassess where you are.

Good advice, I'd actually say 15 lbs.

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